To the Woman who Aborted Her Baby with Spina Bifida

 

Dear Woman,

First off, let me say that I am not writing this on an impulse. In fact, I have given this a lot of thought and have decided to give this situation a “grace period” in which I could cool off, reflect, cry, pray, gain perspective from others in your situation, and allow myself enough time in which to answer you without anger or bitterness.

Of course, this time has allowed me to be more merciful and fair to you. But please know that I needed this time as much as you did. It’s not easy to for me to process my emotions about an issue that is so personal to me.

But, you E-mailed me asking for advice and answers. After choosing to terminate your pregnancy of a child with spina bifida, you want my advice, my insight, my wisdom, on how to have a “healthy” baby.

How’s this?

I have nothing to offer you. No advice, no answers, no wisdom, no tips, no magic crystal ball to predict what your next child will be like. 

My first instinct, upon reading your E-mail to me, was to hate you. After all, you managed to break down wall after wall of cautious, precarious illusion of self-esteem that I have spent 28 years painstakingly building. And for 28 years, it has worked for me.

 

Mami_baby

My Mami when she was about eight months pregnant with me. I am my parents’ only child.

 

When I first began blogging five years ago, I was moved by the many moms who contacted me. Most have had children with spina bifida, and some were pregnant with a baby with spina bifida, and wanted advice on how to handle the birth of a child with “special needs.” Or maybe they wanted solidarity; just the notion of knowing someone else out there in cyberspace can relate. I was elated at the idea of being able to help these women; give them a glimmer of hope for what the future held for their children. I offered them my friendship and unconditional support, and in return, I have been rewarded many times over by their reciprocity, their encouragement in my difficult times, and their genuine happiness at my triumphs.

Then I opened your E-mail. It’s as if five years’ worth of fortresses of support and encouragement from these moms and little white lies I told myself quickly eroded around me. I was exposed. Vulnerable. You shattered my illusion of invincibility.

I built a community of support and encouragement, of sharing knowledge along with the good, the bad, and the ugly about spina bifida. Women all over the world contact me to thank me for simply sharing my story, trivial as it may seem to many. Because the story of my normal yet fulfilling life gives them hope. It helps them to know their children can aspire to this.

And yet, I cannot help you, because you aborted your baby. You cut the common thread we would have shared. Now all I see is a large, dark chasm between us, because I am nothing like you. 

No, I am that child with spina bifida, the one you chose to abort. I look in the mirror, and I see the life that was discarded because it wasn’t deemed worthy of living.

And you ask me for advice because you don’t want your next baby to turn out like me.

And I am angry beyond words. Because in spite of all I have accomplished in my life, no one wants to have a child like me.

Not even my own mother would have wanted that. But she did.

 

Mami_me_crawling

I was about 18 months old in this picture. Whether or not Mami envisioned having a baby with spina bifida, she and I have always been thick as thieves.

 

And that, plain and simple, is what frightens me the most. That maybe, just maybe, your story and my mother’s are not all that different. You each won the lottery that no one wants to win.

I wish you well…and maybe next time, take a second glance at your lottery ticket.

Join Me in Getting Covered #TakeCareChat

Disclosure: This post is part of a campaign with Ad Council and Get Covered America. I will be compensated for publishing this post and for participating in the Twitter chat. All ideas and opinions are my own. 

 

If there’s someone who truly understands the value of having good health insurance, it’s me– trust me. I certainly wouldn’t be here without the vigilant care of many good healthcare providers and nurses, and there were times in my childhood when I was literally in and out of the hospital every other week.

Sadly, more than 1 in 6 Americans don’t have health insurance.

This is mostly due to one of the following reasons:

  • They don’t receive coverage from their employer 
  • They cannot afford coverage
  • They were previously denied coverage because of a pre-existing condition

 

Under the new Affordable Care Act, people cannot be denied health coverage because of a preexisting condition.  This is fabulous news for me, having spina bifida and hydrocephalus! Thanks to the ACA, insurance companies can’t turn me away because of that. 

I feel very blessed and fortunate to have access to good healthcare, and I don’t wish to take that for granted for a single second. But, if you’re not willing to take my word for it, perhaps you’ll listen to this adorable menagerie of pets who have a message for you:

 

 

What’s more, most people will have to pay a fine if you don’t enroll in healthcare up by March 31st. The 2014 fine is $95 for an adult or 1% of a person’s income, whichever is greater. (The fine is $47.50 for a child, and a family can only be fined up to $285.)

I’ll be joining Ad Council and Get Covered America TOMORROW from 1 to 2 p.m. E.T. during a Twitter chat where you can learn more and ask questions about getting covered. Be sure to follow @GetCoveredUS on Twitter and Tweet using the hashtag #TakeCareChat to participate in the conversation!

 

Parrot

In the meantime, you can visit GetCoveredAmerica.org to find out how you can enroll in health insurance, and to get answers to some frequently asked questions about the process. There are also some pretty awesome tools on the site, like the Get Covered Calculator, which can help you discover how much assistance you could qualify for to help pay for your insurance coverage.

Figuring out how to navigate the ins and outs of the ACA can be daunting, especially since it’s so crucial to your health and to the health of your family. But with the proper tools and resources, you’ll be enrolling in no time– and hopefully by the deadline of March 31st!

 

–Laurita

The Resolution to Resolve: Following Up on the Hilton New York

After I publicly denounced the Hilton New York last week for their gross oversights in wheelchair accessibility, something of a magical nature (as any blogger knows!) happened: I got a response. 

This past Wednesday, only a day after publishing Accessibility is Not Optional: An Open Letter to the Hilton New York, the Resident Manager of the Hilton himself, called me up and apologized for the whole mess. We spoke for almost an hour (!), during which time he repeatedly expressed his regret for all that transpired, and he also took the time to tell me about steps that the hotel administration is taking to ensure better access for all patrons.

One thing that I found really interesting is that some (not all) of the rooms already have a  system that causes lights to go on, illuminating your path on the floor when you get out of bed during the night. He also told me about some other key accessibility features, such as a vibrating pillow in lieu of a clock’s alarm and strobe lights for people with hearing impairments.

They are also working on a separate accessible bathroom, to be used only by patrons with disabilities, on the second and third floors where I spent so much time during the BlogHer conference.

Kenneth Jarka, the Resident Manager I spoke with on the phone, was kind enough to share with me an E-mail that was forwarded to him. It’s related to the elevator incident, and it was sent by the Director of Security of Paramount Group, Inc., the building that leases the space in question and that is used by the Hilton. Above is a screenshot of that E-mail, which tries to explain what happened.

While the changes described by Mr. Jarka are, indeed, very promising innovations, I feel it is still very important to hold the Hilton accountable, especially after an E-mail I received from a fellow blogger, who has been working on a story about this. The Director of Corporate Communications replied to her:

“There was a misunderstanding and everything has been since clarified with our resident manager who spoke to one of our guests who was affected by an elevator being out of service.  Our resident manager spoke to the guest for an hour this afternoon and everything has been resolved.  In fact, she was very pleased at how we handled BlogHer ’12 this year and praised various team members for doing their due-diligence and [taking] special interest in her situation when one of the elevators was affected and personally escorted her to an event on an other floor.”

Well, here, in turn, is my complete response to the blogger, in regards to Hilton Corporate’s statement:

I wouldn’t go as far as to say the issue has been ‘resolved.’ Rather, there is a resolution to resolve it. According to my conversation with Kenneth Jarka, the resident manager, they are putting systems in place to solve these problems. Unfortunately, I didn’t get the whole story while I was staying at the Hilton New York, but after my conversation with Mr. Jarka, here’s what I know: there is, in fact, a working elevator (and I’m told, it’s a nice one) that could have taken me from the second to the third floor for the events held in America’s Hall. Here’s the problem, though: the Hilton leases that space– they don’t own it. It is part of a separate building next to the hotel, owned by Paramount Group, Inc., and the security personnel was in charge of keying on the elevator leading to that space. Well, that didn’t happen– the security personnel in that building failed to do so, leaving me no other choice but to take the cargo elevator. 

My conversation with Kenneth was actually very pleasant, very honest on both our parts, and he genuinely apologized for all of the inconveniences and negative situations that took place. But I think the issue goes deeper than that– it is a matter of communication between the personnel at the Hilton and the personnel at the other building. 

On the bright side, Kenneth took the time to tell me about other innovations that have been made to ensure accessibility and comfort to all guests, and he welcomed suggestions I had that might make it easier for wheelchair users, in particular. 

While the initial feelings of negativity that I was left with after this experience are gone, I’m looking forward to an ongoing communication with the Hilton management in which I can hopefully express some of the needs of people with disabilities in terms of accessibility. I feel very encouraged as to where this is headed, but the Hilton New York– and no doubt, other hotels with similar issues– have their work cut out for them. Accessibility is an issue to be taken seriously by all corporations, not because we deserve ‘special privileges,’ but because we need certain accommodations to ensure we have equal access like all other patrons. 

According to the latest census, there are 36 million people in the U.S. living with a disability. That’s a huge economic power we wield, so we need to hold all businesses accountable to the standards set forth in the Americans with Disabilities Act.”

So, there you have it.  That is my somewhat-confused response to a very confusing situation. I think the real lesson here is that corporations are not single units. Rather, they are large organizations comprised by thousands of people, and while, as a corporation, they might share a core value or general opinion on an issue, for the most part, you will get very different reactions and interpretations from different people on different issues.

While the response from corporate left me feeling as though they are scrambling to do damage control (although my blog post was not written with the intent to “damage,” mind you, but merely to shed light on a problem), my conversation with Kenneth shall forever remain in my mind as a genuine attempt to make personal amends, from one human being to another. 

After all, why go through all the trouble of forming departments such as “human resources” and “corporate communications” and “guest relations,” if we fail to see the value in communicating and relating, one human being to another? 

And that’s what my conversation with Kenneth was all about. No statements, no agenda– just one human being chatting with another. 

I’ll keep you all posted as anything else develops. 

 

Laurita 😉